Summer3
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Member # 35286
posted
My HR is 38 today.........non-resting. I am having a headache, feel every beat, dizziness, near-fainting etc.
I see an EP. I have an implanted heart monitor. I faint constantly from low BP so that's not unusual for me. I tried my Rx options already today without success (midodrine for low BP and hyoscyamine to raise HR). I also tried fluids, salt, licorice and caffeine.
I'm not in immediate danger but a HR of 38 is not normal for me (resting is usually 80) so it's uncomfortable. Any ideas of other ways to raise it? The EP says it's from autonomic dysfunction........difficult to treat and even a pacemaker wouldn't prevent me from fainting because the low HR is a response to my low BP. I need some help with something that actually works.
Carol in PA
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posted
Can you get your blood pressure checked?
I thought when the blood pressure decreased, that the heart rate increased to compensate.
In the mean time, lie down with a pillow under your legs. Elevating the feet will increase bloodflow to the head.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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I'm always a little wary of giving advice without knowing the exact situation. And I am not a physician. But perhaps you could look into fludrocortisone and ask your doctor about it.
It can be used to treat low blood pressure and in my experience it also increases heart rate. Dr. B also mentions it in his guidelines, it is used in Lyme patients more often. Very importantly, it is not immunosuppressive, if used in small physiological doses.
(Edited by Notti to remove some personal info)
I know autonomic dysfunction makes you feel horrible and I hope you find some relief soon. Best of luck!
(Breaking up the text for easier reading for many here - Robin)
[ 07-15-2014, 01:23 AM: Message edited by: Notti ]
Posts: 109 | From The Netherlands | Registered: May 2014
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Summer3
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posted
I tried florinef before midodrine and even though it isn't supposed to lower your immune function, I had two VERY high fevers the two times I tried restarting it (105 which is rare for me).
If I go back on Florinef, since it didn't help my BP the first time my doctor wants me on a pretty high dose........like 0.4 which is getting up there.
My BP is also low or normal. Never high. It was 78/42 at one point with my HR at 41. I think when I was in the 30's it was 104/60. That's typical for me. Normal is around 110/70 for me and then I drop to 80's/40's or below and usually will faint if I don't lie down and heed the warning signs.
Normally my problem is fast HR so this issue is kind of new......especially to be happening frequently. It used to be extremely rare for me to ever get below 60. When it does drop like this though two times I have fainted with severe confusion afterwards which is scarier than my normal fainting so it puts me on edge.
posted
Like I wrote before, it's difficult and I am not a physician. So these are just some thoughts.
Regarding the fludrocortisone and immune suppression: Perhaps you should see it the other way around. In order to make a fever you need an immune system that works. Your body can't make a fever if your immune system is severely suppressed. So perhaps the fludrocortisone was in fact helping your immune system function instead of suppressing it.
Fludrocortisone needs salt and water to do its job, so it's best to increase your salt intake considerably. I have been advised to drink two litres per day and together with the fluid in your food that makes a total fluid intake of circa three litres a day.
At first you may feel worse, but it is best to continue to follow the protocol for at least a couple of months to see the results.
I also wonder if your cortisol has been tested properly (24 hour saliva test)? Low levels of cortisol can be a cause of low blood pressure as well. Progesterone is the precursor of cortisol. So low progesterone could lead to low cortisol.
I would be very careful with the use of herbs. Some, like valerian, may unintentionally lower your blood pressure and many herbs counteract traditional medication. This also includes certain foods like grapefruit and supplements like melatonin, which both lower blood pressure and interact with other drugs. (IV) Magnesium can also cause hypotension.
Where I live cancer patients are strongly advised against taking herbs and supplements when they receive chemotherapy, because of unwanted interactions. If not, traditional drugs can become completely ineffective, malabsorption occurs and there are more side effects.
It is important to keep things as simple as possible.
Posts: 109 | From The Netherlands | Registered: May 2014
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Summer3
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posted
Yes, I would go off herbs if fainting was my only problem and symptomatic treatment for it actually worked.........mainstream meds for POTS/fainting/bradycardia are not working for me either whether on or off herbs.
My cortisol is okay tested via 24 hour saliva and urine.
I don't have access to antibiotics and since I have 0 quality of life anyway I am not concerned about herb interactions. Might sound morbid, but it's reality. I'm lucky if I can portray myself as normal on any given day.
The last time I went off herbs to prove a point to my cardiologist it nearly killed me........literally. I was vomiting 50 times a day, couldn't get to the next room without collapsing from syncope, had severe tachy and PVC episodes, etc. I proved my point to him though and documented it on a heart monitor. In my case herbs were definitely not causing my heart and BP symptoms.
posted
Pyridostigmine is also used to treat low blood pressure. I don't know if you have tried it yet. You could ask your doctor if it is suitable.
Again I would like to emphasise that not any medication will work if it is counteracted by something else. You say you don't care about interactions anymore, but the result is that if it doesn't work, you are left empty handed. You don't know what is working for or against you and it becomes a vicious circle.
Perhaps symptom management and trying to stabilise things is the best you can do at the moment. It could give you some time. And once things have settled down a bit you can try to treat the cause again with a protocol as simple as possible.
Wishing you all the best.
Posts: 109 | From The Netherlands | Registered: May 2014
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Summer3
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posted
Have you taken Mestinon Notti or do you have experience with it?
Thanks for your input. I have tried not treating Lyme and purely focusing on heart and BP symptoms with medications from the cardiologist. As I said, I almost ended up hospitalized from a complete downward spiral of all symptoms including the ones he's been trying to treat.
posted
I don't have any experience with it myself. I have read about good results however. It is very unfortunate that you don't have access to antibiotics.
Posts: 109 | From The Netherlands | Registered: May 2014
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Summer3
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posted
Yes, I know. Oral antibiotics didn't help me any better than herbs (although it was substantially easier and less expensive for me to take antibiotics over herbs).
I really need IV antibiotics but am not able to afford that. Nor am I able to afford to see Dr. Grubb for fainting which was suggested by the cardiologist. So I'm basically stuck slowly getting worse and having pretty much no quality of life whatsoever.
posted
Have you considered taking ceftriaxone as IM injections instead of IV? I know that in Europe the medication itself is approximately half the cost and you don't have to buy all the additional materials that are needed for IV therapy. Cefuroxime is even cheaper and penicillin G injections cost even less, but you would have to be sure that you are not allergic to penicillin. I have heard that even in late stages injections can work quite well. Perhaps it might be a good compromise given your situation.
Posts: 109 | From The Netherlands | Registered: May 2014
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Summer3
Frequent Contributor (1K+ posts)
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posted
Yes I have heard of that and given my lack of pain response to straight IM magnesium I think I could handle doing that myself.
Since I don't see a doctor that prescribes that routinely, it would be difficult to obtain. So it's on my list, but as a last resort if I start spiraling downward again into a bedbound state and cannot get out of it with herbs. I cannot take bicillin because of an allergy to amoxicillin.
I think in my situation Babesia is more of an issue than Lyme so Rocephin may not be extremely helpful. I always reacted much stronger to herbs and antibiotics/antimalarials that hit Babesia compared to ones that only treat Lyme. Since I don't seem to absorb meds (or food) well, possibly due to more autonomic dysfunction issues, my first choice in treating Babesia would be IV clindamycin if I could afford it. I believe it's the only med that has an effect on both Lyme and Babesia in IV form.
posted
Clindamycine can be given as an IM injection as well, in divided doses. So can quinine, if you would want to use this combination. This therapy is known to have a lot of side effects though and is not always effective. But I know the treatment options for Babesia are quite limited compared to Lyme. May I ask if you have also been tested for Bartonella?
Posts: 109 | From The Netherlands | Registered: May 2014
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Summer3
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posted
I don't test positive for Bartonella but it's extremely likely that I have it.
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